Living in the pediatric cancer community for over 3 years now, I've been honored and privileged to meet amazing families who are currently on their path to healing after the loss of their child or consulted with newly diagnosed families and children, where the outcome for a DIPG diagnosis is 100 percent terminal. I've been lying to myself for years that a cure would be around the corner, but the truth is... we have several years in waiting. The cause for the delay... funding, time, limited tumor samples to analyze, the complexity of the cancer, and lack if pharmaceutical support.
How do families operate under these conditions while the incessant need to protect, nurture, and care for these precious children are the number one priority of parents? I've prayed to God to take the cancer away from Zachary and place the burden on me. I've asked for my life to be sacrificed for a cure for my son. I've investigated with great confidence the spectrum of the latest medical treatments... to find myself running in circles when no treatment was to be found.
This does not minimize or diminish the hard work clinicians, surgeons, researches and the medical community have on finding a cure. Sadly, the inner circle of the oncology community does not feel we are any closer than we were 5 years ago. They do pride themselves on the steps already taken but in the grand scope of things... baby steps.
How should families operate under these conditions? There is no right or wrong. One day...someone will be the one, unfortunately, the odds are currently not in anyone's favor. My wife and I chose the path of "no stone unturned." "Seek and you shall find" or "no matter what the cost." Like many family journeys... we were left with no regrets but no different than any other family who choose a different path.
If I knew then what I know now, I would have chosen a different path. Instead of weekly visits to the oncologist, the multiple scans to determine tumor progression, the countless hours reviewing phase 1 trials which have proven to add some benefit of longer term survival but a cure is not to be had. I remember the hundreds of phone calls. The hundreds of e-mails and the incredible roller coaster we traveled. In the end... did any of our hard work pay off. Unfortunately not.
Am I telling families of children with DIPG to give up hope? Am I losing hope given the complexity of the cancer and limitations of resources? Am I completely abandoning the traditional method of managing any cancer? The answer is No.
I am in fact making a case to all parents who have traveled and WILL travel my path to think about what's in the best interest for their child and what are you willing to give up, sacrifice or prepare to do. The only thing that is constant is time.
I think back about the numerous surgical procedures and how many "wasted" days were spend to buy more time. The thousands of wasted hours waiting and wondering. I look back on my time with Zachary and wonder what could have been.
The question I pose, which only you as the parent or caregiver of the child can make is... How is your time best spent and under what conditions.
In the early stages of Zachary illness, and shortly after radiation, Zachary was in fair to good health. Should that time have been spent on vacations, personal and memorable moments, enjoyment of smiles and laughter, moments of sights and sounds, the exposure to opportunities we dream about but never take advantage. Are we doing a disservice to our children who have terminal cancer and NOT treat the condition but prolong the inevitable. The guilt is sometimes more consuming then the loss.
Do I have regrets... No. I worked with an incredible team of doctors who gave me hope that Zachary could have been the "one." If you knew there was no chance for survival and a cure is beyond reach, would you still follow the traditional path or make a new one? Sometimes in life the "expected" choice is not always the right choice. Only you can make the right choice.
David Bernstein
Co-Founder / President
Fly A Kite Foundation
www.flyakitefoundation.org
David@flyakitedoundation.org